I knew Finley was delayed, but reading the official words "Cerebral Palsy" on her medical chart provided me with an out of body experience. In that instant my dreams of 'chasing our toddler in diapers down the hallway' evaporated into thin air. I was filled with fear; What was our future going to look like? Would she ever walk? Would she ever talk? Would she ever be independent?
I remember feeling like I was so rude because all I wanted to do was ask other special needs parents "when did your child (sit, crawl, stand...)" you know, the milestone questions. I was desperate to acquire any sort of idea on what to expect for our future with my newly diagnosed child. I often felt alone and hopeless, like I was drowning.
I had a hard time with the fact that I just felt so selfish, like it was all happening to only me. It was happening to our family, and more importantly- Finley. In my mind, I was faced with choosing between one of two directions: pity or positivity. I chose to move forward and make my daughter's young life (the part that I'm in control of) one that would instill strength in her physically and emotionally. No matter how difficult it could be, I chose to give her my 100%.
I began documenting our life via our Instagram fifiandmo when she was just 1.5 years old, Finley turned 4 this past July. I have received countless emails and messages from SN parents asking me the milestone questions. Everytime I read one and prepare to respond, I take a long breath and remember exactly how it felt to be in their shoes. I read these emails and I just want to reach through the phone, hug them, and tell them:
It is going to be okay.
At some point all of the fear and the 'what ifs' will grow quiet. Before you know it, you'll have endured through this season and be on the other side. You'll look back at the road behind you and realize you aren't the person you were at the beginning of it. The painful and beautiful life of a special needs parent will make you stronger and give you the gift of perspective. Through the tears you will find that the best treasures are occurring in your everyday life.
To this day I still have weak moments, probably once every few months. I remember when I felt like I was having at least one melt down a day. I won't forget what it feels like, but I totally do have moments where I cannot remember all the milestones. So, I decided to compile all of finleys milestones from 0 to 3 years old (in almost chronological order.)
I still remember praying for
the things I have today.
B I R T H
My preemie was born at 31 weeks gestation. She had bilateral grade 3 brain-bleeds. Same size, but the right side took longer to resolve- as a result her left side is weaker. Her diagnosis is Spastic Diplegia- both legs affected. She has overall left side weakness. She was on ventilator first few hours of life, weaned off pretty quickly.
B O T T L E
She finished her first bottle when she was one month old, which puts her at 35 weeks gestation. (The ability to 'suck' usually comes at 34 weeks). She had the Dr. Brown bottle up until she was 14 months old, she started biting the nipples off around 13 months. One night we were on the last bottle in my inventory, and she bit the nipple off! (Nooo!) I couldn't leave (hubby was gone) to get a new one. Luckily, I had her on a Munchkin sippy-cup during the day that she had mastered that straw with... So I just had that for her to drink when she was thirsty that night and just like that- the bottle was quit cold turkey. (I wish I could say the same for the pacifier 😫)
C A R S E A T
She could tolerate the car seat, but screamed/cried everytime she was in a stopped car. (Until she was 8 months old)
For this I had many mirrors and toys. I discovered that driving with the air blasting, cracked windows, and rocking her tightly strapped infant carrier side to side- worked! I did this until she went forward facing. Little did I know this was part of her 'sensory issues' which I think it's a sensitivity to motion really. She still does the same thing in elevators. (Which is super fun.) Nothing like driving with a baby that HATES the car! I avoided any unnecessary driving trips like the plague!
B A T H
She also couldn't tolerate bath time until she was 6 months old- also due to sensory issues. She would scream/cry for the entirety of the time in the tub, it sounded like we were torturing her. I would bathe her as quick and calmly as I could! Then it happened- I remember it was around Christmas time. I put her in and was bracing myself for another joyous bath time and she just laid there so peacefully and even started splashing & smiling. Hallelujah! Thus began her love for bath time. Talk about night and day. Here she is with her sweet friend, Casen, that is just 2 months older than her. Currently I can't get this chick out of the tub!
D R O O L
The drool!! It was the worst while she was teething, obviously. I just remember different materials would make her drool & it was pretty recently that I noticed she wasn't drooling as much. It was like she sort of outgrew it. Every now and then when she is really concentrating or really stimulated a big glob of drool will roll out. But for the most part we were "intense drool" free at three!
C R E E P I N G
I would say she never did a true creep until about 11 months old. From 7 months to 10 months she really just sort of wiggled and slithered her way around.
R O L L I N G - O V E R
Finley could roll over from front to back around 6 months old, and back to front around 9 months old. She struggles still rolling from her weaker side. But NOW at 4 years old she can roll and roll and roll (I believe this is a skill she acquired post - SDR surgery.)
S L E E P I N G (or lack of it)
The NICU had her on a 3 hour schedule, so I attempted to keep that up at home. I quickly noticed the best sleep she got was her naps during the day (on my chest). The max she got was 2 hours if she was laying flat. She would get 3-5 if she was in her bouncer. She would get 4-6 if she was on her tummy. (I think the pressure on her front side helped her sleep. The first year was totally unpredictable. Once we started her on solids she would scream from either gas or a burp. I had to learn to decipher the difference between the two. The second year she was up anywhere from one to 8 times a night, muscle cramping, restlessness, and thirst. It got easier he more she was able to communicate, we still crack up at the way she would yell "babaaaa" from a dead sleep. Lol.
Growth spurts were the best, she would sleep so hard. Teething was the worst, no sleep for weeks. She would make grunt like noises and I could just tell she was uncomfortable, so I would simply flip her body to the other side, and she would stay asleep. As a result of all these disturbances, we conveniently began co-sleeping. At age 3 she was sleeping 12 hours a night with help of her pacifier. NOW, at 4 we still co-sleep, but I think she's ready for her own bed soon- probably after our trip in a few weeks. She has growing pains here and there- but mostly she will wake up once or twice for water and then goes right back to sleep.
S I T T I N G - U P
I brought the bumbo with me everywhere until she was 8 months old. Let that be known, first. That tells you right there her trunk control was very wobbly for practically that whole first year. This one is really tough, because I have a picture from Finley's 7 month milestone, and she's sitting up with pillows all around her. She could sit, but had to solely focus on balance, it was very wobbly. I would say nearing 12 months old is when she could begin to sit and play. I would NEVER sit her up on the ground and then leave her unattended though ... Until she could go from crawling to sitting- which was closer to 15 months old. It was then that she had full control to get into a sitting position and out of it. Sitting on Counters or Chairs still make me Leary at age 4- so theres that. She recently was able to get in and out of chairs an into her walker (again I believe skill from the result of the SDR.)
C R A W L I N G
I'll never forget the first time she crawled on her hands and knees. It was definitely an overnight thing! It was Christmas morning and she just got up and started crawling around! I couldn't believe it!! She was 15 months old and it was the best Christmas present I ever got. She pretty much solely crawled like that after. She tired easy.. But got stronger and stronger and faster and faster over time. At 3 she was ale to go UP stairs, but not really down them. Now post SDR she is up and down stairs, drawing at lightening speed, and into everything lol.
S O L I D S
Here is my wonderful husband feeding her solids for the first time. After a few tries she got the hang of it down! That drool though always made for a nice mess! She probably spit up everytime she ate until she was 15 months old. It just became part of life. She really loved anything puréed and all the puffs. She struggled chewing and would often just swallow her food whole. (Making for digestion difficulties and an upset tummy.) She coughed and practically choked during every feeding, I got very comfortable doing the swipe! Currently she eats anything and everything and is a healthy girl! Her chewing skills have definitely improved, although she still chokes on occasion- her gag reflex is very sensitive.
F I N G E R F E E D I N G
I had to look back through my photos to jog my memory on this one. This is Fin at 11 months, she is feeding our dog, Sherlock. She was around 8 months when she started being able to get the puffs in her mouth with a pincer grasp. Right hand only. We have been working on her weaker hand and she has about 80% accuracy to this day with it. At 4, post SDR she has more control of her fine motor- so she can eat with her left hand holding a bowl and a spoon or fork in her right hand- only experience some moderate spilling. Major progress.
T A L L K N E E L
This girl.. This was about as great as her tall kneel got. But we could entice her with play and food to stay in this position. We worked realllllly hard! Here she is at 15 months old. At age 3, before the SDR her legs would just want to hyperextend and stand up, she didn't love being in tall kneel. NOW, post SDR she tall kneels without holding onto anything! She can push toys on her knees and its awesome.
G A I T - T R A I N O R
We had a traditional kids walker in our house and would constantly stand Finley in it so she learned to be upright and enjoy it. It was great for her core strength and encouraged her to play with her hands. (I ignored of all the advice I got on why walkers were so bad, I knew it would be beneficial for my undiagnosed child).
We didn't get to take our Gait home until close to her 2nd birthday. Before that we just used them about 2 hours a week at therapy. Once we had it at home, I would lock the wheels in place and we would go along the sidewalk and she would have to control herself down and up the driveways. She loved going down the little hills so much it would motivate her to push up the other side.
S I P P Y - C U P
As I mentioned before it was a pretty easy transition to the sippy cup. Conceptually Finley struggled that the cup needed to be held down to get liquid out of the straw. Then I found the munchkin anchored straw sippy cup, best find ever! I would buy every one target had in stock, because Finley would gnaw at the straws.. I loved those so much! Then we discovered the Nuby spill proof sippers, life-changing!! Great Grip and not too many parts!
P U L L T O S T A N D
She actually started pulling to stand and crawling up the stairs on the same day, she was 18 months old. I remember crying my eyes out! I was so excited!! From that moment on she pulled herself up on everything and would stand sort of leaned over like this, she would try to bras the weight on her arms for the most part.. And the spasticity in her legs would make them just lock, it was crazy watching her pull to stand like this. She currently (at 3 years old) still sort of pulls to stand like this, we are working on bending one knee to help her stand up properly using more leg strength
K A Y E - W A L K E R
She began doing a lot of sitting and pushing in the gait, and I wanted to continue to push her since she got the hang of getting around in the gait trainer. I called it a boat, it was heavy! So we started with the Kaye in therapy and she did so well. We later got to bring a loaner home, close to her 2nd birthday- it had stoppers in the front and no swivel. After her 3rd birthday we advanced to four wheels and swivel in front. She's getting the hang of it, it requires lots more core control with the swivel! At age 3 it was still used it as more of an activity, I wouldn't say she just walked around the house with a walker, it's more like we used it during "walking time". Post SDR at 4 she is able to get herself in and out of it and use it as transportation on her own terms. She can even put down her own seat and sit in it. Miraculous.
P U S H I N G A T O Y
I'll never forget this day! Up until then I called all push toys "The Devil"- She would cry and cry because she would be so great rates! It was awful. I actually avoided many play dates during this phase. She was a little over 2. She was doing better with her walker in therapy so I figured I would give it another try one day. And she did it. She maintained her Balance while pushing! She tended to hold tight with her arms as if she could hold up her weight with her upper body. To this day she still needs her push you to be weighted down in order for it not to flip up & cause her to face plant.
P O T T Y - T R A I N I N G
We haven't seen a Urologist yet, but I'm certain her bladder's spasticity is affected by her CP. I haven't pushed it so much but I often ask her about peepee. We have gone on the toilet a handful of times. Poopoo on the otherhand, we are on the potty very frequently for. I had her on miralax for awhile due to the size of her BM's. They caused her pain to push out, they were huge! The miralax helped, but I wanted to have her on something better for her. I put her on probiotics, and we haven't really had issues since. Her core strength and the fact that she moves around all day probably are key factors to helping the movement flow through her digestive tract. Post SDR we have very little bowel issues and more potty trips. We are still in size 6 diapers.
S W I M M I N G
We did Mommy and me swim lessons at 15 months old and she loved it. She struggles with closing her mouth on command, so we didn't put her under much. She did great in the babyseat canopy flotation devices, moderate tipping as she got older.
Shortly after her SDR, at 3- we were in the spa and she had her swim vest on and she was actually kind of swimming! She was moving her little body around and kicking her legs, and maintaining a small balance. She tired easily so we couldn't do it for longer than an hour or so, but it was awesome to watch her go from one side of the spa to the other. One week after her 1st round of Stem Cell Therapy (4 years old MAY 2017) she was full blown swimming in the pool with her floatie on: splashing, hands in the air, confident. From one side of the pool to the other, and back again. Night and Day Difference.
C R U I S I N G F U R N I T U R E
So, this was really recently too!! She was 34 months old I believe! We have been working on "side stepping" for almost a year! Up until then she had done it in such a way it didn't really look like "cruising". I came around the corner and she was going around the table!! It was unreal. She was slow around the corners.. But she had it down! She currently is beginning to let go with one hand and transfer from table to couch and back again. This is the also the first day that she would fall, and it wouldn't be the end of the world. She just got back up and kept at it. Proud mama moment for sure.
T A L K I N G
We were pretty concerned with her speech because one of her bleeds appeared to be near the language area. I prayed specifically for her language skills. While she was delayed in conceptualizing, she was very communicative. She never qualified for speech. She's very shy, and startles easy- so most of the time she doesn't speak to people.
M A S T E R I N G B A T H T I M E
When she turned 3 was the first time I've ever seen her move around the tub like a typical wild kid. She stands up (pulls to stand), gets down, swims around, lays down, and just maneuvers herself very well. It's taken LOTS & LOTS of therapy, time, and patience to get here.
P A C I F I E R
So, I made lots and lots of excuses. When Finley was a baby I remember working SO HARD at getting her to suck the pacifier and then do something with her hands. It was one of the first skills we accomplished (involuntary sucking). It was everything to me, it was bonding. Sounds silly to some. It became our comfort, it got us through long nights, illness, travel, and surgeries. After Finley turned 3 it became more of a want than a need. My Dentist brother told us how expensive and painful her mouth could potentially be to make room in her mouth for all of her teeth- her bite was VERY bad. Yikes. The day after Mother's Day we decided to get rid of the Paci - she pretty much only used it at nighttime. Her preschool had told me that she wasn't allowed to have it at school (I remember panicking more than Finley lol). It was a rough 3 nights of PURE HELL, and then she never asked for it again. I am glad those days are behind us- it got pretty embarrassing. (Finley at age 3 in the picture and me trying to HIDE her Paci in pictures.). She did go from sleeping 12 hours to about 9 so that part stinks.
I N D E P E N D E N T S T E P S
THIS!!!!!!! We worked SO INCREDIBLY HARD TO GET HERE!! HOURS AND HOURS of THERAPY, Surgery, and two rounds of Stem Cell Transfusions. I wouldn't say she's an "independent walker" quite yet- but my goodness is she pretty independent! She can crawl to her walker, pull to stand, our around, and start walking- all by herself. I remember WISHING AND HOPNG for the day she would be able to do that. And while I still long for her to be fully independent of and device- I MUST never forget how far we've come. A sweet friend posted about this on her FB recently- she said her friends have to often remind her that her son "can walk" - it hit my heart when I saw that because I talk about Finley's independence as a thing of the future- but its very much a thing of the present.
I would trade being able to celebrate these million milestones for anything in the world! It's been a blessing to our life to be able to cherish all the small things. Keep your head up Mamas and Papas, slow and steady wins the race - because of the perspective you gain from the road more traveled! 💚